Evidence map›Paper›PMID 37002464›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2023

Ethical and practical considerations related to data sharing when collecting patient-reported outcomes in care-based child health research.

Shelley Vanderhout, Beth K Potter, Maureen Smith, Nancy J Butcher, Jordan Vaters, Pranesh Chakraborty, John Adams, Michal Inbar-Feigenberg, Martin Offringa, Kathy Speechley and 2 more

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Article
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

12 authors.

Shelley VanderhoutSchool of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada.
Beth K PotterSchool of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada.
Maureen SmithPatient Partner, Canadian Organization for Rare Disorders, Toronto, Canada.
Nancy J ButcherThe Hospital for Sick Children Research Institute, Peter Gilgan Centre for Research & Learning, Toronto, Canada.
Jordan VatersDepartment of Philosophy, McMaster University, University Hall, 1280 Main St W, Hamilton, ON, L8S 4K1, Canada.
Pranesh ChakrabortyNewborn Screening Ontario, Children's Hospital of Eastern Ontario, Ottawa, Canada.
John AdamsPatient Partner, Canadian PKU and Allied Disorders, Inc., Toronto, Canada.
Michal Inbar-FeigenbergThe Hospital for Sick Children, Toronto, ON, Canada.
Martin OffringaThe Hospital for Sick Children Research Institute, Peter Gilgan Centre for Research & Learning, Toronto, Canada.
Kathy SpeechleyDepartment of Paediatrics, University of Western Ontario, London, Canada.
Yannis TrakadisDepartment of Human Genetics, McGill University, Montreal, Canada.
Ariella BinikDepartment of Philosophy, McMaster University, University Hall, 1280 Main St W, Hamilton, ON, L8S 4K1, Canada. binika@mcmaster.ca.

Funding

CIHR 171684
6 · The paper itself

Abstract

purposeThe collection and use of patient reported outcomes (PROs) in care-based child health research raises challenging ethical and logistical questions. This paper offers an analysis of two questions related to PROs in child health research: (1) Is it ethically obligatory, desirable or preferable to share PRO data collected for research with children, families, and health care providers? And if so, (2) What are the characteristics of a model best suited to guide the collection, monitoring, and sharing of these data?

methodsA multidisciplinary team of researchers, providers, patient and family partners, and ethicists examined the literature and identified a need for focus on PRO sharing in pediatric care-based research. We constructed and analyzed three models for managing pediatric PRO data in care-based research, drawing on ethical principles, logistics, and opportunities to engage with children and families.

resultsWe argue that it is preferable to share pediatric PRO data with providers, but to manage expectations and balance the risks and benefits of research, this requires a justifiable data sharing model. We argue that a successful PRO data sharing model will allow children and families to have access to and control over their own PRO data and be engaged in decision-making around how PROs collected for research may be integrated into care, but require support from providers.

conclusionWe propose a PRO data sharing model that can be used across diverse research settings and contributes to improved transparency, communication, and patient-centered care and research.

Indexed as

Child HealthQuality of LifeChildCommunicationHumansInformation DisseminationPatient Reported Outcome MeasuresChildrenData sharingPatient-reported outcomesResearch ethics

Identifiers

PMID37002464
PMCPMC10329050

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.